Mayo Clinic Connect
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I am 26 years old and was added to the kidney pancreas rransplant list on feb 21st 2014 can anhbodh tell me about thier transplant experiences and. Parricularlh thier wait time. J also live in washington and am listed in phoenix whT hppens when yoh geg that call how long dk j have to get thier ty
I received a pancreas only in 2011. I had been on the transplant list for about 6 months and had 12 hours to get to the hospital. We live 10 hours away, but it was the middle of winter with an icy storm between us and the hospital in Rochester, MN. We had made contact with a charter flight that was able to meet us at the local airport and fly us to Rochester, landing just before the airport was shut down due to the storm. Then we had about 4 hours to wait before we could check into the hospital and were not allowed to wait at the hospital. We stayed across the street at the Kahler. During my hospitalization my caregiver moved into the Gift of Life Transplant House, which we have been using ever since when it is available to us. If we had not lived close enough, the Transplant House would have been available for us to wait until a pancreas became available. The first year was horrendous, as other issues that had been hidden by long-term diabetes came to light. I was hospitalized 9 times in the first 12 months, lost my independence and ended up in a wheelchair. I could not drive, cook or clean my house and had to depend on other people to take care of everything. Fortunately things began coming together and I am now back to driving and only using a wheelchair for long distances or where there is no seating available. I am now stable and my goal is to stay so for as long as possible. At the time of my pancreas transplant I was informed that I would probably need a kidney transplant in 3 years. Sure enough, at my 3rd annual exam I was referred to the renal department to be assessed and followed regarding a kidney transplant. Thank God for that! We discovered that oxilates were the primary cause of the damage to my kidneys. I began a low oxalate diet and have since been able to improve my kidney function enough to be removed from the transplant list. We also discovered that I cannot assimilate fats and I have also added a low fat diet to my treatment plan. Despite the rough first year, this has been a wonderful experience for me. I have discovered underlying issues that are now being treated and am greatly improved. I no longer take insulin or need to check my blood sugars 4-6 times a day, and my blood sugars are stable with an a1c of around 4.7.
Liked by Colleen Young, Connect Director, Rosemary, Volunteer Mentor
@2011panc Welcome to Connect. I’m happy that you found us. Thank you for sharing your amazing and dramatic story of your arrival during the storm. I’m happy that you are doing well after that rollercoaster first year. I am short on time right now, but I had to welcome you, a fellow transplant recipient – and from Mayo Rochester, too!
I’ll be back in touch soon.
In the mean time check out the Living Life after your Transplant discussion for some helpful hints. I’ll bet you have some that you could add, too.
Rosemary liver/kidney 2009
Hi @2011panc. I’d like to add my welcome too. Here is the link to the discussion Rosemary refers to
It would be great to have you add to that discussion.
Liked by Rosemary, Volunteer Mentor
You are amazing!! What a struggle you have been through yet you are pushing forward and remain positive. This will be the perfect platform for you to inspire others!! Congratulations on your perseverance, courage, and love of life!! Happy Thanksgiving:))
Thank you all for your welcome and kind remarks. Also thank you for the referral to the Living after Transplant discussion. I don’t really hear about the mental, emotional and spiritual challenges recipients (or caregivers) face, so I am hoping for continued support in these areas from this group.
@2011panc I am happy that you have found us. We transplant recipients and our caregivers) do have to stick together and to support each other! You have just given me an idea for a new transplant discussion! I hope you will join me there! Rosemary
@2011panc, How did you find our Connect discussion? Rosemary
I had been searching online, but I only found technical and caregiver support groups. I asked at my last annual exams if they were aware of any talk/discussion groups for recipients and they sent me this link.
Congratulations on being placed on the transplant waiting list! For me, It was a frightening experience because I did not know what I was facing. It was also hopeful, because I knew that my docs were carefully watching over me.
Time seems to moves slowly. In my case, I became very sick and could not do much of anything. I had to really work at getting some exercise, and my husband had to make sure I would eat. I was afraid of the surgery, and afraid that I would not get a transplant in time. So I cried a lot.
Every one’s wait is different, and your medical team will be able to answer questions about your particular condition. Ask your questions to them and believe their answers. They know what they are doing and they know about your needs.
When you get the call, you go right away to your transplant center where they get you ready for surgery. Your transplant team will talk to you about how much time you have to get there.
I received a Liver/kidney transplant 5 years ago. And I am doing great! I wish for you to have a successful transplant when the time is right for you.
Thanks so much for your reply my head is just spining with questions.
The doctors told me i might wait up fo one year im just ancious and nervous
cant believe this is happening but. One day i will look back and remembee
this life changing expierience
I understand what you mean about your head spinning! You sound like you have a good positive attitude, this will help you a lot. You might consider keeping a journal to keep record events/dates that occur during your waiting and eventual transplant. Years from now, it will be interesting to review. It is amazing how much you will forget! I kept one and I am happy I did.
Liked by Margaret Shepard, Communications Specialist
How long did u wait
I waited 5 1/2 months after I was listed. Waiting times are different for everyone. Organs are very carefully matched to a recipient. So the waiting time is needed for the best organ to become available for you that “matches” you.
I have met people who have waited less time than me, and I have met people who have waited more time than me.
Be patient, and trust that one will be available when you need it.
I am a pancrease transplant receipant any one else on here that has this kind of transplant?
Liked by Rosemary, Volunteer Mentor, Colleen Young, Connect Director
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